Publications (peer reviewed)
- Young, N.L., et al., Development of a health-related quality of life measure for boys with haemophilia: the Canadian Haemophilia Outcomes – Kids’ Life Assessment Tool (CHO-KLAT). Haemophilia, 2004. 10(Suppl. 1): p. 34-43.
- Young, N.L., et al., How well does the Canadian Haemophilia Outcomes-Kids’ Life Assessment Tool (CHO-KLAT) measure the quality of life of boys with haemophilia? Pediatric Blood & Cancer, 2006. 47(3): p. 305-311.
- Bradley, C.S., et al., Comparing two measures of quality of life for children with haemophilia: the CHO-KLAT and the Haemo-QoL. Haemophilia, 2006. 12(6): p. 643-53.
- Price, V.E., et al., Measuring disease-specific quality of life in rare populations: a practical approach to cross-cultural translation. Health & Quality of Life Outcomes, 2009. 7: p. 92-100.
- Wu, R., et al., Cross-cultural adaptation of the CHO-KLAT for boys with hemophilia in rural and urban China. Health & Quality of Life Outcomes, 2012. 10: p. 112. ( give full pages ie 112- xx )
- Young, N.L., et al., Cross-cultural validation of the CHO-KLAT and HAEMO-QoL-A in Canadian French. Haemophilia, 2012. 18(3): p. 353-357.
- Young, N.L., et al., Updating the Canadian Hemophilia Outcomes–Kids Life Assessment Tool (CHO-KLAT Version2.0). Value in health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research, 2013. 16(5): p. 837-841.
- Villaça, P.R., et al., Process and Experience of Cross-Cultural Adaptation of a Quality of Life Measure (CHO-KLAT) for Boys with Hemophilia in São Paulo, Brazil. Haemophilia, 2013. 19(6): p. 861-5. ( give full pages ie 861-865)
- Cassis, F.R.M.Y., et al., Importance of literacy for self-reported Health-Related Quality of Life: a study of boys with haemophilia in Brazil. Haemophilia, 2013. 19(6): p. 866-869.
- McCusker, P.J., et al., International Cross Cultural Validation Study of the Canadian Hemophilia Outcomes – Kids Life Assessment Tool (CHO-KLAT). Haemophilia, 2015. 21(3): p. 351-357.
- Wu, R., et al., Validation of the Chinese version of the Canadian Haemophilia Outcomes‐Kids’ Life Assessment Tool (the CHO-KLAT). Health and Quality of Life Outcomes, 2014. 20(6): p. 794-799.
- Villaca, P.R., et al., Validity of the Portuguese CHO-KLAT in Brazil. Haemophilia, 2016. 22(6): p. 894-897.
- Wu, R., et al., A prospective study of health‐related quality of life of boys with severe haemophilia A in China: comparing on‐demand to prophylaxis treatment. Haemophilia, 2017. 23(3): p. 430-436.
- Tang, L., et al., Describing the quality of life of boys with haemophilia in China: Results of a multicentre study using the CHO‐KLAT. 24(1): p. 113-119.
- Usuba, K., et al., Impact of prophylaxis on health-related quality of life of boys with hemophilia: An analysis of pooled data from 9 countries. Res Pract Thromb Haemost, 2019. 3(3): p. 397-404.
- Carcao, M., et al., Measuring the impact of changing from standard half-life (SHL) to extended half-life (EHL) FVIII prophylaxis on health-related quality of life (HRQoL) in boys with moderate/severe haemophilia A: Lessons learned with the CHO-KLAT tool. Haemophilia, 2020. 26(1): p. 73-78.
- Lambert, C., et al., Cross-cultural adaptation and validation of the Canadian Haemophilia Outcomes-Kids’ Life Assessment Tool (CHO-KLAT) in Cote d’Ivoire (the Ivory Coast). Health Qual Life Outcomes, 2020. 18(1): p. 76.
- Price, VE., et al., Updating the Canadian Hemophilia Outcomes – Kids’ Life Assessment Tool (CHO-KLAT) in the era of extended half-life clotting factor concentrates. RPTH, 2021. 5(3): p. 403-411.
- Dover, S., et al., Measuring the impact of hemophilia on families: Development of the Hemophilia Family Impact Tool (H‐FIT). RPTH, 2021. 5(4):e12519.
Letter to the Editor
- Young, N.L., et al., Returning the focus to the quality of life of boys with Haemophilia. Pediatric Blood & Cancer, 2007. 49(7): p. 1049-1049
Complementary manuscripts
- Globe, D., et al., Measuring patient-reported outcomes in haemophilia clinical research. Haemophilia, 2009. 15(4): p. 843-52.
- Bullinger, M., et al., Challenges of patient-reported outcome assessment in hemophilia care-a state of the art review. Value in Health, 2009. 12(5): p. 808-20.
- Carneiro, J., et al., Comparing the burden of illness of haemophilia between resource‐constrained and unconstrained countries: the São Paulo–Toronto Hemophilia Study. 23(5): p. 682-688.
- Wharfe, G., et al., The Jamaican Haemophilia Registry: Describing the burden of disease. Haemophilia, 2018. 24(4): p. e179-e186.
Literature reviews
- Remor, E., et al., Disease-specific quality-of-life measurement tools for haemophilia patients. Haemophilia, 2004. 10 Suppl 4: p. 30-4.
- Limperg, P.F., et al., Health-related quality of life questionnaires in individuals with haemophilia: a systematic review of their measurement properties. Haemophilia, 2017. 23(4): p. 497-510.